September 3rd, 2015 | Written by Jo

We are leaving again to head to Boston for Clara’s third Open Heart Surgery. It’s the last of the 3 open heart surgeries that kids with HLHS have, to change their circulation. One big outcome from this surgery is higher blood oxygen saturation levels than ever before, meaning more energy and higher endurance! We are so excited about a pinker more energetic Clara.

This surgery is called the Fontan, it will be the final step in changing her blood circulation. The blue blood from the bottom half of her body will be rerouted straight to her lungs to get oxygenated. Right now, that blue blood just gets pumped right back through her heart to her body again, which is why she still turns blue when playing.

Surgery is Sept 10, we begin pre-Op appointments on Tuesday and have a surgical Cath on Wednesday, Sept 9. The Cath is so that the surgical team can get a look from the inside, measure heart pressures and best understand how her heart is holding up.

We’ve been SO blessed by the Moms who have sent me books and tools and tips! It’s so much more than I could have wrapped my head around alone. This is the first surgery Clara will be aware of. She is going to know what’s coming when she has her blood drawn and tubes pulled and medicine given. It’s a lot to ask of a 2.5 year old.

We are sending Eleanor to my sisters in CO, where she is going to be spoiled with love but super missed.

While this is the “safest” surgery Clara’s faced yet, I think we are more nervous than ever. It’s wildly unnatural to send our silly, outgoing, affectionate, dramatic and super happy girl into surgery. I just want to soak in all my Clara hugs and kisses possible.

Now for some fun Clara stuff:

Clara paints about every day, she loves water colors, but occasionally she’ll paint with finger paint. She calls the finger paint, “bubble paint” because the containers look like bubbles.
She knows all her letters and we are working on her numbers, and she likes to take a book to bed. I catch her waking up to read before she calls me to come get her.

She mimics most everything I do, so when Miss Rumble Tumble Eleanor falls and bonks her head for the 15th time in the day, Clara beats me to the “Oh Honey, Honey, Honey”. Clara takes all my dish towels and puts her babies to sleep all over the house and even attempts cleaning the chalk board and counters. She started to call Joe, “Joe” and I’ve got her to at least say “Daddy Joe” and it’s adorable. Lately, she’s even been asking for coffee to drink.

Clara thinks ice cream is called “apple pie” no matter how many times I try to tell her it’s not. She loves to use me as a jungle gym. She loves her “baby Elle” and stealing her pacifiers. When trying to count “1, 2, 3, go” she actually says “9, 2, GO!”.

I could go on and on, but basically we adore her.

We can’t express how loved we feel by all of you who have be in prayer over clara for the past 3 years. Serving a living God, who can bring joy despite our circumstance is what sustains us when we enter hard times.

Here are specific ways you can pray for as as we prepare for our Boston trip!
- Health, Clara can’t have a cold or surgery will be postponed. She has to kick the end of the cold she has right now.
- For peace over our whole family as we prepare and to reduce our anxiety
- For wisdom when it comes time to talk to Clara about her “sleepover” at the hospital
- That it’s not as hard a separation from Eleanor as I am dreading.
- For safe travels to Boston for us and for Elanor and her Aunt Jen to Colorado.
- And of course, for the Cath and surgery to go smoothly and without complications.

December 3rd, 2014 | Written by Jo

There is so so much to tell you about Clara and her life. Biggest news first, she has a beautiful, wonderful, chubby and perfectly healthy sister named Eleanor. Clara loves her, and not like in a tolerates her kind of way, she seeks her out when I’m doing dishes or cleaning and tries her hardest to kiss her. Sometimes this means she is laying on top of Eleanor, but that’s okay, Eleanor is a chunk, she can take it! We predict they will weight the same within the year.

As was predicted, Clara has a significant speech delay. She has been in weekly speech therapy for a few months now. When we started I just couldn’t wrap my head around how we were going to make a 1 year old try words. She could only say Hi, Mom and Da. Like Physical therapy, speech therapy seems to teach me just as much as Clara. We practice everything we are told and have adopted all the tips and advice our therapist gives us… and it’s working!!!

In the last couple weeks Clara started attempting all these new words: bubble, bath, baby, ball, bye, more, up, mom, da, hi, poop, pop and google. (Yes, she says google, it’s not practical but Joe got her to say it.) I see she is making strides every day trying new sounds and grasping the meaning of her words. She is also mastering signs for wash, more, please, hungry and water. I’m so proud of her, I make her work for things and she always will rise to the challenge, I’m so so proud.

Her heart is stable, that is great news for us. There is the same moderate regurgitation in her tricuspid valve, the impact being that her heart has to work harder. Because it’s not getting worse, they can wait until her next open heart surgery, her Fontan, to repair that valve. She is starting to turn blue more and more, and her naps are getting longer. This all means she is out growing the circulation she has. Her Fontan surgery could be done as late as next Christmas time, a whole year away. But if her oxygen Sats are dropping and she is big enough it could be sooner. They want her to gain a couple more pounds before though.

Sometimes I look at Clara and I’m surprised how little she is. I get so used to her hugging my legs and being my shadow, I don’t get a good look at her from a distance. She is at such a fun age right now. She loves climbing me, playing together and getting tickled or making faces. She laughs really easily and when she is in a normal 23 month old whine I can still get her attention and redirect her. She is amazing.

We covet your prayers friends! Prayers for continued heart steadiness, weight gain and progress in her speech would be so appreciated! Please also pray she doesn’t get sick while we are in CO with our family. A cold at altitude will put her in the hospital, and it happened to her last time.

July 26th, 2014 | Written by Jo

We are accustomed to surgeries taking 6 to 8 hours. Caths that should be 2 hours, taking 5 or 6…. We now expect that if there is going to be a delay in healing or some complication, we will have to face it and that Clara is a Slowsky when it comes to healing.

We were not expecting her g-tube site closure to literally be done within 30 minutes of sending her off with the anesthesia team. In fact, we lingered after breakfast and MISSED the surgeon coming out to tell us how well it went!

The best surprise after surgery was walking into her recovery bay where she was “sleeping” and as soon as she heard our voices she opened her eyes to give us a chipper “HI!”. We both just laughed. Then we kept laughing as she tried sitting up and crawling into our arms, moving like a drunken sailor. Woozy Clara is pretty dang cute.

They did want us to stay for 24 hours to monitor her because they gave her general anestheia and she has such a special heart but within a few hours she was eating and snuggling and playing and being as normal as possible. The only non-normal thing, was her anxiety and that she was sore. The anxiety was really sad and hard for us to have to watch, she had to be in Joe or my arms… put her down and she would panic.

The problem with recovery bays is they are loud. Every nurse in Clara’s mind has something scary or painful to do to her, so none of them could go near her without a lot of tears. Once 11 hours of anxious Clara clinging to us, Joe got the surgical fellow to come see us about discharging early. Joe gave him an impassioned talk about how we are able to monitor her exactly like they were doing, that we are very experienced in recognizing signs of distress and that it would be in Clara’s best interest to go home… NOW. He pushed back on Joe, but Joe explained exactly what they were doing and what we are capable of doing. I don’t think the fellow knew what to do with parents like us, so he called the chief who said - yeah, let them go home! I tried to tell her we were going home, but she was so anxious she wouldn’t let me put her down to dress her. I was so thankful we were going back to our “safe” home.

Would you believe it, Clara relaxed the minute we got in our car, falling asleep. Then as soon as we got into the house, she went straight for her books and rocking chair… as if she hadn’t been in surgery that morning at all!!

We learned how aware she is now at 19 months old. Hospital stays will come with the complexity of managing her fear and anxiety. She knows too much, that clever silly girl of ours! God is so good to our family! Thank you for your prayers, all prayers were answered and we get the joy of watching our daughter grow into a funny little person.

July 7th, 2014 | Written by Jo

Tuesday Morning, Clara is first case for a stomach surgery to close her g-tube site. It was supposed to close on its own, right? Turns out she is in the super minority of kids whose G-tube sites do not close on their own.

She has a pin hole sized opening that leaks smelly stomach juices. It soaks her bandage and her clothes, so we play fashion show some days, rotating through multiple outfits and refreshing the gauze.

The scar she has, will end up smaller than what is there, which I’m happy about. I’ve realized I’m pretty sensitive about wanting her to feel as normal as possible.

We feel at peace about this quick procedure, it should only take 30 minutes after she is under anesthesia. Anesthesia is probably the biggest risk here.

We covet your prayers over Clara and as always, here are practical ways to pray for us as we head to the hospital super early tomorrow.

For there to be no complications, that she recovers so well we can do this as an outpatient.

That she is spared fear as she is more and more aware of what is going on.

For safety for her body as she goes under general anesthesia.

For Joe and I to wait in peace for her

Thankfulness for Clara’s surgeon who ended up being the chief of general surgery/plastic surgery. I love that we always get the best doctors.

May 5th, 2014 | Written by Jo

A lot has happened since my last update - Clara went on a swing. She started walking. She spent some time in the hospital for a cold, then did great through about 3 more colds, she started telling everything that moves “Hi!” (cars, people, animals). It’s been mostly a wonderful wonderful spring.

There is one HUGE milestone we want to tell you about…
Hands down, the most frustrating experience I have had as a parent, was having a baby with an oral aversion. She would not eat, suck on a pacifier, take a bottle or do anything but gag, vomit, scream, flail and cry if you even offered her anything by mouth. I spent almost a year trying to teach Clara something that minute old infants can do. I had little to no hope our efforts would yield anything, I pictured her going to kindergarden with her liquid lunch, hooking herself up to the pump and coloring while she “ate”. The process was stressful and I hated hearing week after week by our feeding therapist that I was doing everything right… I just wanted her to say the problem was me, because it’s easier than having one more thing on the list of issues for Clara. There was one saving grace to all of this - the most wonderful invention, the G-Tube!
Everything that came with having a g-tube is totally amazing. I almost wish our next baby came with one. You can feed, medicate and even BURP your baby with their g-tube. They don’t even need to wake up!

I’ve always thought of Clara’s G-tube as a part of her body, like her legs and arms. That lump poking through her shirts is all we know, I don’t remember what a smooth Clara tummy feels like in my arms. Clara’s g-tube brought her freedom from hospital living, strength through nourishment and her best chance at “normal” life with us. I am forever thankful for her g-tube, you could say I love it even.
Clara was tube fed almost exclusively for 10+ months. At 11 months old, November 21, 2013, out of nowhere, she finished every bottle. I cried that day… I cried the whole day actually.

16 month old Clara is officially an eater. Let’s just throw a Praise Jesus up right now! This means she no longer needs this “body part” I have been so dependent on. It is now more of a risk to keep since she is starting to climb and explore and move everywhere. Can I get another Praise Jesus?!
How amazing that the Lord has brought us to this point.

Last night, WE REMOVED HER G-Tube!!

The hole naturally closes on it’s own. This morning she just has a bandaid on it, it was covered in gauze last night and as you can see a lot of tape.
Unfortunately the directions for tube removal, did not warn us against watching an episode of “Call the Midwife”. Doing that will get you weepy and emotional. I found myself thinking that I was going to miss it!

I couldn’t be a more confusing bundle of emotions - excited and thrilled mixed with anxiety and worry. It might take me a few months to stop wondering if we might need to use it if she gets sick again, but like everything having to do with Clara’s physical body, I am working daily on surrendering that fear and holding tight to my faith, after all, I’m not raising a daughter so that she can live forever, I’m raising a daughter so that she can come to know Jesus and have eternal life.

About Clara's Heart

Clara Jean Portnoy was born on January 2, 2013 with critical aortic stenosis. She underwent a fetal intervention surgery at a 21 week gestational age. Clara had 2 catheterizations in her first 2 days of life and underwent her first open heart surgery on January 11, 2013. Clara had a third catheterization on March 15th and a fourth on June 27th. On June 28th, Clara had her second open heart surgery, the Glenn Procedure. We anticipate her last open heart for a single ventricle circulation to be done before she turns 3.

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Elliana Grace Foundation

The Elliana Grace Foundation’s mission is to provide financial, logistical and emotional support to families facing a complex Congenital Heart Defect (CHD) who travel to Brigham and Woman’s Hospital and Children’s Hospital Boston for Fetal Cardiac Intervention and follow up care. Learn more.